September 2015 marks 76 years since the passing of the 1938 Social Security Act. This act, which was passed at the end of the first term of the first Labour Government, was incredibly popular with the public who had endured the economic Depression of the 1930s. Indeed, for many people life had always been tough.
The Act established the "cradle to the grave" welfare state. Although various types of pensions and other assistance had been available before then, this wide-ranging Act developed a comprehensive package of welfare benefits and a free-at-the-point-of-use public health system. The Family Benefit became universal and reached most families with children (and remained until dispatched by Ruth Richardson in 1991). This was all financed by a tax of one shilling in the pound, or 5%. The Act also established a Social Security Department to administer monetary benefits while medical care benefits were administered by the Department of Health.
I’m a great fan of the idea of the welfare state and socialised medicine. I like the idea that we collectively care about those who may be or become vulnerable and pay taxes so the state can look after them – from each (person) according to ability (to pay), to each according to need.
An immediate effect of the Act was that people started using the free health system and flooded the hospitals and medical services. Many were addressing long neglected health needs. Ongoing expectations of health care subsequently rose and have continued to rise over the decades.
The passing of the 1938 Act was largely due to Minister of Health and Education Peter Fraser, soon to become Prime Minister. He would also have a significant role in the development of the United Nations. He and his wife Janet were from the generation born in the 1880s who had seen and endured social, economic and health deprivation in their native Scotland and had immigrated separately to New Zealand early in the 20th century. They were among the founders of the NZ Labour Party. Once they held political power, the establishment of a welfare state reflected decades of activism and idealism from their generation.
Unfortunately, in the 1980s another Labour Government began to dismantle the welfare state. Then the 1991 National Party’s ironically named ‘Mother of All Budgets’ cut the universal family benefit and numerous other benefits and was effective in destroying many of the principles and effects of the welfare state. Sadly, few remnants remain today. Health funding is ring-fenced and tightly contracted for targets, not needs.
Aside from its gradual dismantling, the public health system of the "cradle to grave" welfare state has also been challenged over the decades by three conditions experienced by children: intellectual impairment, child cancer, and autism. There are lessons to be learnt from these conditions about making a public health system sustainable over time.
Intellectual disability
In 1938, children with intellectual impairment were not expected to live long or to need much support. Care responsibilities fell either on the family (mainly the mother), or on the state through institutionalisation. However, by the early 1950s World Health Organisation best practice advocated community support and services for children and the growing numbers of adults with ID. New Zealand parents wanted such services, and for the new United Nations Declaration on Human Rights to apply to their children too.
Keith Anyon was born with Down Syndrome in Wellington in the 1930s. For years his parents battled for his education, community participation and employment. They worked with other parents to found the organisation that became the IHC, now the main advocacy NGO for intellectual disability, in 1949. Unfortunately, the government of the 1950s not only denied their requests, but instead went in the opposite direction by advocating the existing institutions expand into large ‘mental deficiency colonies’ and that parents send their children to them from 5 years old and forget about them.
Although the last of our large institutions closed in 2006, the remaining welfare state still struggles with the provision of appropriate support for our 30-50,000 citizens with ID. Life expectancy is about 20 years less for people with ID, than those without.
The state has largely failed them and their families.
Child Cancer
Next, let us consider child cancer. I expect that cancer killed children pretty quickly in 1938. It was considered a terminal illness into the 1980s when children began surviving following improved and expensive interventions, such as radiotherapy, chemotherapy and bone marrow transplants. Today about 150 children under 15 each year are diagnosed with cancer and about 80% can expect at least a five-year survival rate (which, unlike adult cancer, is similar across ethnicities). Today there is expectation of treatment, and increasingly of cure.
So a child diagnosed today with one of many possible cancers is likely to be subjected to treatment that may take several years. It may involve complex chemotherapy or increasingly precise radiotherapy. Apart from the cancer treatment itself, there is likely to be cognitive and other functional testing, and ongoing checks for long term effects.
However, increased expectation of a cure has also meant ever-increasing costs. In the 1980s New Zealand had five tertiary child cancer centres – today we have only two. Charities, such as the Ronald McDonald houses and the Child Cancer Foundation, are expected to provide much of the additional support and psychosocial costs, but the bulk of it lands on families.
Is that what the architects of the 1938 welfare state would have envisaged?
Autism
Leo Kanner (an Austrian living in the United States) first named autism as a separate condition in 1943 (five years after the SS Act). Prevalence was assumed to be very low until the 1990s when several things happened: it became to be seen as a ‘spectrum’ and umbrella name for a range of previously rare conditions; the DSM-4 named a new condition called Asperger Disorder which did not have co-morbid Intellectual Disability; and in NZ a mother killed her autistic daughter, which led to public focus on the condition. We now have a conservative estimate of about 50,000 New Zealanders, across the age range, considered to be on the autism spectrum. However, support from the state is limited.
One reason is that in the early 1990s responsibility for disability support services went from Social Welfare into Health (which is why in NZ we refer to our ‘health and disability’ system) and a gatekeeping process of needs assessment and service coordination was developed. Support criteria covered those only with physical, intellectual, or hearing/vision impairment. A separate process was developed for those with mental health issues. But a condition such as autism without co-morbid ID simply fell through the gaps, and did until 2014. Meanwhile numbers of people diagnosed have escalated.
A decade of policy work went into developing the comprehensive New Zealand Autism Spectrum Disorder best practice guideline published in 2008, with more than 300 recommendations. However, seven years later only a tiny proportion has been implemented. So the remnants of the welfare state continue to fail many people with autism and their families.
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So what happened? Why didn’t the 1938 Act future proof the public health system for the needs of future children? One conclusion – and we see the evidence in many areas ‒ could be that children are not politically powerful. In contrast to adult men, perhaps. For example, many major health and disability initiatives, from the concept of rehabilitation, the treatment of Post-Traumatic Stress Disorder, the development of plastic surgery and assorted technology, to the Accident Compensation Commission, came about because men, including politicians, were injured in wars.
So focussing on children is an ongoing policy challenge
In summary:
- New Zealanders will continue to expect the best and latest of what the medical world offers.
- Expectations of support and health care for expensive-to-treat groups such as disabled children and elderly people will continue to rise.
- New conditions of childhood continue to be identified (eg Fetal Alcohol Spectrum Disorder, Auditory Processing Disorder) but there is little policy preparedness to support these children and their families.
- Children are not politically powerful.
- When we aren’t collectively vigilant political decisions will allow health disparities to increase.
How can we reinvigorate and sustain the welfare state so it can provide the best treatment and support for children and families, regardless of any health or disability conditions they might face? Where are the Frasers of our age? How do we encourage and nurture a new generation of social reformers to establish and future-proof the health, welfare and disability support needs of children?